Sunday, April 14, 2013

Another Toompas, another hospital stay.

I can't believe I haven't blogged in such a long time. I'm not sure I've ever gone this long with this far in between posts. I have a billion things to blog about; adventures we've gone on, excitement we've had, and visitors we've hosted.

However, I've decided just to blog on one topic for now:
Mae's Hospital Vacation.

It really was like a vacation for me, with three square gourmet meals a day,  a bed of my own, and the a view to kill for. Pfffft.

We were there for 6 very very long days. I mean very very very long days.
It made it worse that every morning, 5am, after a night of maybe an hour of sleeping that Dr. J would come in and tell us maybe we could go home today. If she could keep anything down. See, even though she was admitted for dehydration once she was hooked up to all these monitors we also saw that her O2 stats were down, and as soon as she became rehydrated she developed a very nasty cough and a goopy nose.

So step back with me to Mae at two weeks old.
I mentioned how very very fussy she was. She just didn't seem to be comfortable, but she wanted to nurse almost constantly. She didn't want any binkis, and she refused to be put down. She was just fussy.
The pediatrician wrote out a prescription for "baby zantac".
I was nervous about giving such a little peanut such a big prescription but after putting it out on facebook land I was comforted hearing many of my friends had little ones who had taken baby zantac and everything had perked up. Our pediatrician said that colic can sometimes be cured/lessened with this medication and sometimes the crying was from "silent reflux" which essentially is reflux without the vomiting. She was vomiting a little bit, but I know it was only because she was nursing too much.
They told us it would take about two weeks for the zantac to kick in.

The next day her crying seemed to get worse. She seemed more like she was in pain than just crying, but a call to the pediatrician a few days later told us that that's normal for colic. She was pulling her legs up and flailing around constantly. She started throwing up a lot. I tried everything I could think of to cut out of my diet, even going a full week without wheat. After two weeks everything seemed so much worse.

Day and night, crying for all but a few hours. She would cry for hours straight at night, 4pm so midnight or sometimes until 2am, once until 5am. Screaming. During the day she screamed too, only during the day I could comfort her by nursing. all. day. She would nurse for about 40 minutes, fall asleep, then about half an hour later start crying again and would root around looking for her comfort boob.

It was a Thursday night when she developed a cough. Have you ever seen a 5 week old baby with a cough? So pitiful. She had no idea how to deal with it! I was pretty surprised because she hadn't had a runny nose! A day or so later she started sneezing up the most... gross gobs of mucous. It went down hill pretty quickly. She screamed and screamed, I'd feed her, she would throw it ALL up, start hacking and coughing and scream and sob until I fed her again. Then throw it all up.
It was SO stressful!

Meanwhile, Lucy had already had a cold for about a week. Lucy is basically always sick so I didn't think much of it. However, her cough that week was getting pretty bad. She would, especially at night, have horrible coughing spells until she would throw up.
As usual Jerry was awesome and would jump up out of bed and clean up mess after mess while I took care of Mae. We're such a good team, I just love him.
Saturday morning around 4am or so I heard it. whoop! I heard it so clearly, I jumped out of bed and yelled, "OH MY GOD! She has whooping cough!" Several hours later she tested positive for whooping cough, pneumonia, and a double ear infection.

Mae however, did not.
They said it was just a little cough.
Mae has a compromised immune system right now from her blood condition at birth. It can take up to a full year for her body to be making enough red blood cells to fight infection. If someone is going to get sick, Mae will probably get sick too. And probably much worse.
The next day Mae's cough was worse. It was Sunday and I went to the clinic up the hill. They swabbed her for RSV and it was positive. She didn't look too bad and didn't have a fever but she was definitely battling a pretty bad cold. They said keep her hydrated and bring her back if she was "working to breath".

On Monday night I took her back to the walk in clinic. She had been grunting all day and finally after Jerry was off work I decided I might as well go so I wouldn't worry all night. She hadn't been nursing much that day and was still throwing up a lot. They gave her a nebulizer treatment and sent us off with saline for the nebulizer at home. It helped her a little. The pediatrician at the walk in clinic told me if I thought she was having trouble breathing still to bring her back or go to the ER. I was assured that she is probably not feeling well and probably has a sore throat and that's why she wasn't nursing.
From listening to her talking with the nurses outside the door it sounded like they were really debating sending us to the hospital... but it was 10pm and we already had an appointment with our pediatrician in the morning so, we would wait.
Tuesday morning we went in right away. She was retracting (when they are breathing in so hard you can count their ribs) and had lost weight since her appointment the week before. Dr. S. was able to see her progressive weight loss since I had taken her in so many days in a row. During her exam she hardly moved and didn't fight or protest him one bit. She just laid there looking very sick. He decided he wanted to admit us to the children's hospital in Puyallup.
It's technically Mary Bridge Children's Hospital, just a branch of it closer to us.
I went home and got Jerry from work. I packed a bag knowing we may be there for a night and Jerry dropped me off at the emergency entrance.
We were in our room by the hour and from there it seemed to get worse.
Her O2 stats were very low so they put her on oxygen right away.

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She was very pale and listless and they put an IV in right away too. Immediately they started breathing treatments to break up the "solid" lungs and suctioned her every few hours.
She cried and cried and cried. and V O M I T E D.
I kept telling the nurses and pediatricians how much she was vomiting. Such mass amounts. They would offhandedly say, "try nursing her in a different position", or "don't lay her down for 30 minutes after eating" or "Make sure she has a nice burp between sides". But it wasn't until our THIRD day there did the nurse actually see her throwing up. She had a feeding tube put in and everything seemed to shift.

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 Suddenly everything was weighed, everything going in and everything going out. I was able to pump and we ONLY gave her my breast milk via her feeding tube. But she was still throwing up.



The doctors started coming up with reasons she could be having this trouble. It was quickly decided that the upper respiratory infection (or really really bad cold) was from something else. One of the pediatricians decided she probably aspirated on throw up and then got an infections in her bronchial tubes and the mucous is secretions from the infection.

First we ruled out RSV. They swabbed her again and this time the swab was negative. They tested for whooping cough again and it was negative again. They x-rayed for pneumonia, tested her urine for infection. After everything came back normal they started thinking about more serious things.

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 Maybe she had a twisted bowl or an obstruction. That one seemed to stick around the longest until they did an ultrasound and she was cleared of that.

Day 4 her throwing up lessened.  Maybe it was an infection in her stomach lining maybe she had celiacs, maybe she has chrones disease, maybe maybe maybe... but everything came back normal time and time again.

Finally on day 5 the pediatrician came in and said, enough is enough. We'll treat for whooping cough since that is what it's acting like and we'll start her back on the zantac. Maybe she just has reflux.

That day Mae was quite a bit more alert and was awake a bit more, but not much. They took her off of oxygen, and only had her using the NG tube if she wasn't able to hold down 2 ounces every 3 hours. They would wake her up and force her to eat or make her wait while she cried, hungry. How do people get better like that? She was miserable!

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She was hungry though, for the first time and on the morning of the 6th day there, Monday, I got to breastfeed. She seemed soo happy after she nursed and fell into a very peaceful sleep.
She didn't throw up.
They asked me if I felt comfortable leaving even though they hadn't figured out what was wrong and I said YES.

They pulled her tube out and 10 minutes later we were released. I definitely felt shell shocked.

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That afternoon I went with Jerry to pick up her prescriptions from our local pharmacy. I love supporting local businesses and this little one is so cute and everyone who works there is so friendly.
I laughed while I was there because I saw three separate people who I knew who asked me how Mae was and the pharmacist herself remembered us.
"This Zantac is a much smaller dose than she was taking so make sure you're giving her the right dose." She reminded me before we left.
I walked to the car slowly. Got in and sat down and looked at Jerry... and then this feeling settled over me. I felt very sick with the clarity. He says, "What? What happened!?"
I looked at her prescription she had just received from the hospital pediatrician: 0.53ml twice a day. I knew right then. She had been overdosing on her zantac.
Jerry and I hurried home and I went and found her bottle right away that she had been taking. The directions were clear; 3.35ml twice a day.

She was taking six times the amount that she was supposed to be taking.
I called the hospital and they agreed that could be the reason. Another doctor appointment and a couple of tests run we found out she is going to be perfectly fine and there is not going to be any lasting effects from this "long term overdose".

We found out that the "fault" lays with the pediatrician AND the pharmacy. It was a two part mis-communication...though the pharmacy has more to blame because they should know a 9 pound baby should not be getting such a strong prescription.

We've decided to let it go as a mistake and to be more mindful ourselves into checking out any medication our kids are prescribed. (I feel like a total idiot even saying that. Of course I should have been before! *head to table*) I absolutely adore our pediatrician but we have decided to use a slightly larger pharmacy in the future.

The first day home I decided I would let Mae sleep as long as she needed and to nurse as much as she wanted. We stayed in bed, cuddling skin to skin for hours and hours. Then I gave her a long warm bath. She just perked up so quickly after that.

She is doing great in the week and a half since she's been home. and completely off of Zantac. She is fattening up, smiling, and getting loved on by her siblings who missed her so much.

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A very very very big thank you from the bottom of my heart to everyone who brought us meals, to my parents for staying with the kids for a few days and taking them to Spokane for a week, to my sister who kept kids at her house even though she has two little guys who keep her super busy, and to the literally hundreds of people who prayed for us and sent us encouraging notes and who offered help but I didn't take up. 
My aunt told me her neighbors had their whole church praying for us. I had people I didn't know who had heard Mae was sick email me to say they were praying and people offering breast milk to us. Thank you, from someone who is much too prideful much too often, this was a very humbling experience.  

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